Tuesday, October 02, 2007

Barry and his mom did it right. I am so glad that he had a good week. It sounds a lot like you. Remember how we took you to Toys R Us right before you died. It wasn't such a hot trip. Also, you and I had tickets for the University of Minnesota football game, but you got a fever and we didn't go.

I feel so bad for Barry's mom, but I am glad he isn't suffering any more.

Boy with rare blood disease dies

By VINCE DEVLIN - Missoulian - 10/01/07

MISSOULA — Cindy Wamsley curled up next to her son in his bedroom Saturday afternoon, and whispered in his ear.

“It’s OK to go to heaven,” she told him.

“Mommy, I’d get there faster if I knew how,” Barry Simon answered.

They fell asleep together. Wamsley opened her eyes a half hour later.

Barry didn’t.

The 13-year-old Missoula boy, who captured the hearts of hundreds of people during his two-year battle with a rare genetic disease called Fanconi anemia, died in his mother’s arms at about 3 p.m.

“I woke up and kissed his cheek, and he didn’t move,” Wamsley said. “He looked so happy. There was no pain, no fear on his part, not one bit. It was so peaceful.”

Simon died after one of the best weeks of his life since he left Missoula in August 2005 to undergo a bone marrow transplant.

He got to see his oldest sister and grandfather, who traveled from California. Several old classmates and many people who had written him cards and letters stopped by to say hi. Russ and Shirley Van Tine, who have faithfully mailed him a $5 weekly allowance since the transplant, came by to tell Barry they were raising his allowance to $10.

“Because he’s a teenager now,” Wamsley said. “Barry was so happy.”

At the invitation of coaches, Simon attended Little Grizzly football games Thursday.

“Barry did not want to go, but I forced him,” Wamsley says. “He had the most beautiful time. I wasn’t sure where I was going and parked about as far away from the field as I could have been, but they held the game up until we got there because Barry was the honorary team captain.”

In a wheelchair because he was too weak to walk long distances, Simon performed the coin flip, then was surrounded by almost 300 football players his own age who chanted “Barry! Barry! Barry!”

“Then they high-fived him,” Wamsley said. “He got a high-five from every one of them. Next thing I knew he was out of his wheelchair and chasing his sister around, shooting Silly String at her.”

On Friday the family was off to the mall, where they spent six hours shopping.

“The last two days, you could hardly tell he was sick,” Wamsley said.

Saturday morning was different.

Paint for his room

A Hummer stretch limo pulled up to the family’s small Missoula apartment. Simon and his family were to go to the University of Montana’s homecoming game against Weber State, on a trip arranged by Montana Highway Officer Richard Hader and the Montana Hope Project.

Hader had gotten sideline passes for all of them.

But Simon, who stopped the daily blood transfusions that were keeping him alive three weeks ago, and went off all but five of his 30-plus medications two weeks ago, wasn’t up to it. The limo left, and later Simon asked to take a nap.

Simon had wanted his bedroom painted black, and Wamsley and daughter Jamie had about a third of it finished Friday when Jim Bauer, another of the boy’s regular letter-writers, called Wamsley to see if there was anything he could do.

“Finish painting?” she suggested.

Bauer came over that evening and completed the job, then arrived Saturday morning to help put up black curtains.

“It does not look morbid,” Wamsley said. “It looks warm, calm, peaceful. It’s what Barry wanted he wanted to be able to open his eyes and have it be dark.”

When Simon asked his mom to take a nap with him Saturday afternoon, Bauer carried the boy from the living room couch into his bed.

The little apartment was filled with family and friends including April Christofferson, who recently bought Barry a pet ferret but Wamsley shooed them out as she and her son curled up in the bed and she whispered the last words Barry would hear.

“It’s OK to go to heaven.”

Barry’s story

Simon was born March 30, 1994, in Walnut Creek, Calif., underwent surgery immediately and spent the first 19 days of his life in the intensive care unit.

“He was born with his esophagus and trachea not connected,” Wamsley says. “He came into this world a lot harder than he left it.”

Simon is survived by his mother, two sisters Jamie Mullikin of Sacramento, Calif., and Brittany of the family home; his stepfather, Richard Wamsley; and Wamsley’s children Robert, Michael, Kelly and Greg; his grandfather and his wife, Lemual and Rozzane Southorn of Redwood City, Calif.; and his grandmother, Anita Smith of Modesto, Calif.

“He’s home now,” Wamsley said. “He waited until his family was here, he waited until his room was painted black.

“God loaned me Barry for 13 glorious years, and I’m so grateful I had them with him. He’s in heaven now, where he can be happy and healthy. And he was so brave.”